Jeff is one very special young man! He has a rare syndrome called CHARGE Syndrome. He has faced many life threatening conditions and surgeries in his life. He is such a fighter and has blessed many lives with his strong, beautiful spirit. He is deaf/blind and non-verbal and deals daily with many challenges.
He is 29 yrs. old and is a very happy young man with a fun sense of humor.

Sunday, August 14, 2011

Since Mom is FINALLY trying to get my blog updated, she's now going to post about my dental check-up from last month. When I get my dental work done, I have to go into the operating room in the hospital. I don't entend to let ANYONE get into my mouth unless I'm out cold. So, that's what they do....put me out cold. It's no big deal for me. I go in happy, the dentist cleans my teeth or does any work that needs doing, then I wake up, go home, and I'm usually happy. It was a piece of cake because I had no cavities this time.

Wednesday, August 10, 2011

Just wanted to let everyone know that I had a great birthday!! I got lots of birthday wishes from so many of you....Thank you for remembering me.

Because I get 'over stimulated' when there's lots of people around, it was just Mom, Dad and me. Mom made me this yummy Tagliatelle gluten-free pasta w/shrimp, veggies, in a garlic cream cheese sauce for dinner dinner. Mom is cool, she knows how much I love pasta! Oooo it was good. Then, for desssert I had an awesome gluten-free choc brownie/ice cream birthday cake.

Here's a picture of me before blowing out my candles.

Here's a picture of me enjoying my birthday cake...YUM!

Here I am playing with one of my birthday presents....I LOVE these things!

I stayed up really late on my birthday playing with the toys I got. Then, the next morning I did the same thing. I was so engrossed building things, that I completely forgot that I like to eat every two hours. I didn't stop until after lunch, and only then, because Dad made me come eat some lunch. And get this, I didn't take a nap at all that day!!!!! I ALWAYS take a nap sometime during the day. Man, I was just too busy! Yes sir, it was a great birthday!!

Sunday, August 7, 2011

Soon you will be 27!! As I look at those years, I realize they have gone by so very quickly. As your birthday approaches there are things I wish I could say to you. Because of the challenges that afflict your body, and bind your mind, you would not understand. As I morn the loss of the verbal communication that we can never have here on earth, the feelings within my heart spill out of me with no place to go.

As other young men your age move on from their missions, graduate college, have jobs, get married and start having families, do you ever wonder what your future has in store? No, I suppose not, as the future is not anything you can comprehend. Because of your mind, what others consider "normal" everyday hopes and dreams, have been taken from you. But dear Jeff, after this long earthy journey ends, you will be given all that you have missed out on in this life.

If you were capable of ever asking, Why am I here? - This is the answer that I would give you. YOU ARE HERE TO BE MY TEACHER, and a teacher to those around you. One day, in the next life, you will be able to open this gift with joy and understanding.

First, you taught me what it means to experience the kind of love that exists only between a mother and her child. Sometimes I thought I would expire from sheer elation. Sometimes I thought I would expire from sheer exhaustion. Both could claim Mother love to be their sire.

From the very beginning of your life, you suffered with many life-threatening health conditions, surgeries, and physical challenges; you taught me patience, tolerance and long-suffering. You also taught me about sacrifice, charity, service, and what it means to forget one's self. I yearned with every fiber of my being-would have given every fiber of my being, to have you whole. But that was not to be. You then taught me to accept and cherish you for who you were, not for what might have been. You have taught me to study, learn, fight and to never give up.

Throughout the years you have taught me what is truly important in this world and quite frankly, what is not. Most of all, you have taught me what it means to align my will with that of God. To know that, in every case, His ways, His means, His timetable, His truth, are all that is worth having. You have taught me how much He loves me, and how much trust He has placed in me, by allowing me to have you in my life. I know that if I am ever to return and live with Him, I needed all the things that only you, would and could teach me.

You, my son, ARE A TEACHER, and the gift of knowledge has no price!

Thank you for all that you have taught me. I love you beyond measure, forever, and always.Your loving Mother

Saturday, August 6, 2011

In February Mom's back started getting bad. She has had a lot of pain ever since! Something about a bulging disc pressing on a bunch of nerves. Nothing seems to be working and the doctor is talking surgery. To be quite honest, she's been no fun at all. Plus, she hasn't posted anything at all for me. I've been having lots of fun this summer with my support worker Daniel. He's a cool guy, and I like doing things with him.

My great Dad has been doing almost everything for me and for Mom. He has learned how to help me with all my personal cares, fix my food, clean up after me, and well, basicallyeverything that Mom always did. I wanted Mom to post this for me, just so you guys know I'm still around, happy and enjoying life.

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About Me

Jeff is one very special young man. He was born with CHARGE Syndrome. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

To find out more about CHARGE Syndrome

Note From My Mom

As Jeff's Mom, I feel so very blessed to have this choice young man to love, care for and serve daily. He is a delight and has been my greatest JOY and CHALLENGE rolled into one terrific young man. Jeff has touched more people and overcome more in his short life than most people do in a lifetime. What an example and inspiration he is. He is my mentor, my hero, my teacher. I truly believe Jeff is one of those special spirits that was sent here just to teach others. I know he certainly has taught me what's most important in this life. He has taught me so much and continues to do so daily. Because of Jeff, and wanting to help him grow to be the best he can be, I feel I have probably gained the equivalent of an honorary degree in medicine, education and law. At times it's been extremly hard, and at times it's been much easier. But I can truthfully say, it's been worth every tear I've shed, every ache in my heart, every fight I've had to fight. The smiles, the laughter, the love, and the strength of my son have made it all worthwhile. I am so grateful and thankful to my Heavenly Father for the blessing of this choice young man!